Happy New Year!

When we celebrate the birth of Jesus at Christmas, I’m always reminded that birth brings a new life and new beginning. A week later comes the New Year, also a time of new beginnings. Tradition makes us think of what our resolutions should be as the New Year begins. We think of things we want to change or improve; and, most often, we are starting over on resolutions of things that we’ve tried to change or improve previously. In spite of my best efforts at resolutions, I’m always reminded that, generally, my efforts are futile without the help and strength my faith in God provides.

On a lighter note, most of our resolutions are based on the activities of the previous 6 weeks that begin with Thanksgiving and end with New Year’s; what I like to call the “eating season”! Born out of this is the most common resolution made by all – to lose weight and exercise more, and eat healthier foods in the coming year.

We had a very enjoyable Christmas and have certainly “eaten our way” through the holidays! I felt very blessed to have the energy I needed to enjoy having our family here on Christmas Eve and Christmas Day, and to be able to do a lot of the cooking and preparation, with the help of my daughters. One of my best memories is snoozing in the rocker/recliner after Christmas dinner with my grandson, Ty, asleep on my shoulder.

This week’s lab reports showed some improvement in my blood counts – back to where they were two weeks ago, but still not adequate to begin treatment again. There is slight improvement in my feet. The numbness seems to have lessened and tends to come and go in its severity. I think this is a good sign that the nerves are trying to recover. I have been in touch with my nurse at Stanford each week and my oncologist will return next Thursday, the day of my next blood test. My nurse is hopeful I will be ready to begin treatment again at that time; however, my dosage will be lowered. Once the decision is made to move forward again with treatment, it will take almost a week to receive my next prescription and actually get started again. At that point my treatment will have been suspended for 4 weeks.

Although it has been frustrating to have my treatment suspended so quickly, I am grateful for the opportunity it gave me to have more energy and be able to really enjoy the holidays.

We continue to trust the Lord for healing and health, and with the roadblocks that continue to plague my attempts at treatment. We continue to praise Him that I have remained healthy in spite of the low blood counts that have left me very susceptible to illness and infection.

An Angel named Audrey

We were all busy making preparations Christmas Eve for our evening gathering with our family. We had a timeline and a goal. We were still wrapping packages, preparing food, arranging tables, etc., and we needed to leave the house by 4:30 to arrive in time for the 5:00 Christmas Eve service. Shortly before lunch, I heard a knock at the front door. It sounded just like Jeff’s knock (Jen’s boyfriend) and since we were expecting him to arrive anytime, I did what we always do when he knocks I yelled “Come in!” I then walked toward the front door to greet Jeff only to be surprised by a woman standing in the foyer. We stared at each other for a moment before recognition hit and we embraced each other in a big hug. It was a good friend of Johanna’s from her days in British Columbia, Canada, working on her MA. We hadn’t seen Audrey in several years and she hadn’t seen my gray hair.

Audrey had spent many an overnight in our home as she traveled back and forth for holidays and summers to her home in S. Cal. and we had all grown to love her. She now lives and works north of San Francisco, and is a licensed massage therapist on the side.

We were thrilled to find out there might be one more person around our table on Christmas Eve, only to learn that she had made the long drive for just few hours visit with us and had to return later that afternoon. After a brief visit with Johanna, we were told that she had come with her massage table and where could she set it up to give us all massages! Wow! Timelines and schedules went out the window! We did all make it to church on time, but all we really wanted to do after our massages was sit and relax! It was wonderful! What a gift!

When we arrived home from church, everyone chipped in and we got our meal on the table in good time even though the prep hadn’t been completed before we left.

Bless you, Audrey, for using your talents to bless us!

Merry Christmas......HO, HO, HO

I am determined to enjoy Christmas with my family in spite of the fact that my blood counts were even lower this week instead of showing improvement. My nurse at Stanford was very surprised at the results and indicated she has never seen a situation such as this. My oncologist is out of town for the holidays, but my nurse was going to send him an email regarding my situation. The neuropathy in my feet has improved slightly, but is not completely gone. So, not only do I have a rare type of my particular kind of cancer, I am now experiencing unusual responses to treatment. But, God is still in control and I figure it just provides Him with an even greater opportunity to show His mighty Hand.

The immediate concern with such a low white blood count is to maintain my health. Even the common cold would be a danger to me right now. The immediate miracle is that my energy level is much improved from last summer and I’ve been able to do a bit more; but, I have to be careful not to push myself too much and tax my system, setting it up for illness. The ongoing miracle is that I have stayed healthy to this point even though others have been ill around me. The admonition to “Wash your hands!” that began in early childhood and still rings true today, has played an important role in my ability to stay healthy. Purell, a hand-sanitizing product, is my constant companion. So if I meet you somewhere and shake your hand, don’t be offended when I immediately take out my Purell and “wash” my hands!

Christmas preparations are nearly completed. Jen and her boyfriend, Jeff, went to the mountains several weeks ago and cut trees for both families. Within a few days, they had it up and decorated and some decorations throughout the house as well. The best decoration this year, however, will be our beautiful grandson, Ty.

I’m looking forward to Christmas this year with the same excitement that I remember experiencing as a child, even though the weeks prior have been unusual for me – no choir concert with my students and not being able to attend many other Christmas programs that are a part of our normal routine. My excitement is generated by the time our family will have together. Now that Johanna has returned from Indonesia, the entire family will be here to celebrate together for the first time in several years. My grandson, Ty, will not lack for arms to hold him and people to love him, but I will make sure I get equal time! The one thing I look forward to the most is that we will all be together in church on Christmas Eve. Since we all attend different churches, this is my one request at Christmas – that we all attend the same Christmas Eve service. We rotate among our various churches through the years, and this year we will attend First Nazarene Church where Jesse and Lyn are worship leaders for one of their 3 Sunday morning services.

The Christmas story from Luke 2 will be read numerous times in churches and homes over the next few days as people are reminded of the true origin of our holiday and celebration during this season. We don’t really know when Jesus was born. His actual birth date has not been recorded anywhere. There is much speculation from Biblical scholars that He was born earlier in the fall. However, the important thing is that we do celebrate His birth and remember this momentous occasion when God physically crossed from the realm of heaven to earth. In Luke 2:14, the angel of the Lord and the heavenly host praise God and say: “Glory to God in the highest, and on earth, peace, goodwill toward men!” We all long for peace and good will, but how many of us truly acknowledge or declare the Glory of God in our personal lives? Everyone loves a sweet little baby, but that sweet little baby becomes a challenge when he begins to walk and talk. Jesus was crucified for His “walk” and His “talk”. Yet, He is called the Prince of Peace. All we have to do is look around us and look around the world and we know there is no peace. His Christmas gift to us is the inner peace that His salvation brings and the promise of eternal life with Him and our Heavenly Father.

Wishing you a Christmas a filled with His inner peace.

We Now Pause For........

My visit to the doctor in Stanford turned into a fun social event which helped soften the blow that treatment has had to be suspended for now, due to the numbness in my feet and a WBC (white blood count) that is too low. Weekly blood tests will now commence, watching for the numbers to improve, and a bit more isolated life to avoid exposure to illness. When treatment resumes, my dosage will most likely be lowered in order to prevent further neuropathy and low WBC.

The WBC is actually the total number of all the different types of white blood cells, each having a particular responsibility in maintaining our health and fighting disease and infection. The one that is the primary concern during cancer treatment are the “neutrophils” and mine are too low to continue treatment until they recover and the number returns to an acceptable level. (For an explanation of neutrophils: http://www.wisegeek.com/what-are-neutrophils.htm)

The numbness on the bottom of my feet is baffling to them. They’ve never heard of a neuropathy situation presenting itself in such a manner in response to my particular drug.
Other than a few little prickles a couple of times that were very brief during the first week of treatment, I do not have nor did I have, the usual symptoms of pain and/or tingling, prickly sensations. They just went numb. So, while we wait for my blood counts to improve, we are all hopeful that my feet will recover. If not, then I get to add another doctor to my long list, a neurologist, along with the decision of whether we see someone locally or someone at Stanford. Even though it is a long drive, for something unusual like this, I think I would prefer a doctor at Stanford. I seem to be very good at “unusual” stuff and now have quite a long list of specialists!

Since the drive to Stanford is usually 4 – 5 hours depending on the traffic, we decided to drive down the day before my appointment and spend the night. On Wednesday evening, we had dinner with my cousin Norman Ebersole and his wife, Phyllis, who live about 35 minutes from Stanford, depending on the traffic. We had dinner at a great restaurant next to our not so great motel. We had such a good time visiting over a leisurely dinner.

When Steve & I attended the Myeloma Symposium in November (see post: “One Step Closer”), we met a couple at our table. Nora was also newly diagnosed with Myeloma. The 4 of us visited for a little while after the meeting. Nora and I exchanged email addresses and have been corresponding ever since, sharing what we have learned about our cancer, our experiences with the journey toward diagnosis, and difficulties with insurance companies and treatment options. Of course, we have also learned a lot about each other as individuals and our families. Steve & I felt it was very providential that we had connected in November. Providentially, Nora was scheduled for labs and a bone marrow biopsy at about the same time as my labs and doctor’s appointment on Thursday. The 4 of us connected at the Lab and had opportunities to visit while going back and forth for our visits and procedures. We then enjoyed a nice lunch together at a nearby restaurant before Steve and I headed for home.

At my appointment on Thursday, I got to meet the nurse who I have worked with over the phone these past weeks. She is very efficient, friendly and knowledgeable, and I really like her. She even gave me a hug when she first came in the room and met me! My oncologist, Dr. Coutre, was not in the clinic on Thursday and so I saw his associate (for about 5 minutes!). But, my nurse, Stacey, was in touch with Dr. Coutre by phone so he was actually making the decisions. His associate just had to give me the quick once over to assess my physical condition.

My next appointment at Stanford will not be scheduled until treatment resumes. During this time of waiting, I’m going to get back on my herbal supplement regimen. In looking back, I think they contributed to my improved WBC in October when I first visited Stanford. Stacey, my Stanford nurse, has encouraged me to take multi-vitamins and minerals. They acknowledge that herbal supplements can have powerful effects on the body, but because they do not know what the interaction and effects might be with the herbals and the chemo drugs, they request they not be used during the first few cycles of treatment. After that, they are okay with one being added at a time. I have, however, continued with eating a very healthy diet that is organic as much as possible, and making fresh juices.

Thanks for your prayers last week. We had a safe and uneventful trip, and I had the energy to help drive. My platelet count (the cells that clot your blood when you have an injury) was my concern last week and those numbers were fine. Our claim for reimbursement for my drugs for last month is being processed, but we still haven’t received anything. We’re anxiously watching the mail everyday!

Thank you for your continued prayers for complete healing! Until that is evident, prayer focus for this week: 1) that I will be able to stay healthy in spite of my low counts; 2) that the numbness in my feet will clear up and not return; 3) continue to pray regarding our reimbursement for my drugs; 4) that all the arrangements for getting my weekly lab work done here will go smoothly; 5) that the Lord’s presence will be evident in our lives as we meet and encounter new people.

Dex Day

Today begins week 4 of treatment. I will have 7 days off my cancer drug, Revlimid, but will continue to take the once a week dose of my steroids, Dexamethasone. So today was a Dex only day.

Today was also my once a month infusion of immunoglobulin, which restores some of the immune system my cancer has destroyed. It won’t completely protect me from illness, but it will especially help protect my lungs from pneumonia. Normally, I would have 4 mg of Dex infused through my IV just prior to my treatment. That was not necessary today as I already had 40 mg on board. It was interesting, however, being tethered to an IV for 6 hours today when I would normally be doing something much more active with the energy it gives me! My daughter, Jen, spent a couple of hours with me this morning and we chatted away like magpies (or was I the magpie on steroids?!) After going for these infusions for over a year now, everyone at the infusion center knows me well and they each stop for a chat sometime during the day. I always bring lots of things to do to keep me busy, but I usually have so many little visits that I don’t accomplish much. It does make the time go by quickly, however, and I do enjoy my new friends.

I’m feeling much better this week since I’ve been on antibiotics for the sinus infection, and am pleased with how well things have gone for me during this first cycle of treatment. I hope I can maintain good health once I finish taking the antibiotic. The numbness in my feet has continued to come and go and move from place to place. Hopefully, it will clear up during my week off.

On Wednesday I had to re-order my drugs for next month. You can only get a one month supply at a time and each month I have to answer the same questions and listen to the same instructions before the order will be filled. Also, the doctor has to complete a survey and write a new prescription each month. When I called, I let them know that I never received a receipt for my credit card purchase for the prior month and all of my voice mails and emails had been unanswered. The pharmacy tech connected me directly with a billing rep and she faxed a receipt to me. She also gave me her number and extension and the name and extension number of the person handling my account. So this piece of the puzzle will go smoother from now on I hope. I found it quite interesting that over the next 24 hours I received 2 more faxed copies of the bill from different people at different billing locations, an email, a phone call, and a copy by snail mail! Guess I finally was able to rattle a cage! So, this is a praise for answered prayer!

Now that we have the official receipt we have submitted it to our insurance company who handles our specialized cancer policy. This is a defined benefits plan and pays only certain things, some of those items are things our regular health insurance doesn’t cover and some of those items are paid in addition to our regular health insurance.

We will make the long trip to Stanford this week, as I will see the doctor on Thursday. My oncologist is out of town, but his associate will see me. I’m looking forward to meeting her and meeting the nurse coordinator who I have been working with over the phone for the past month.

Prayer focus for this week: 1) the numbness in my feet to clear up; 2) that our cancer policy insurance company will interpret the cancer treatment reimbursement in such a way that the benefit would pay 80% of my meds; 3) safe travel for our trip to Stanford; 4) for a good report on my labs.

Each of you is so special to us! We so appreciate your prayerful focus each week and for standing with us through this trial.

Week 2

Blessed sleep was mine last Friday, steroid day, with the aid of some sleeping medication. I slept fine the following night without it, so now know that I only need to take it one night a week.

I have experienced quite a bit of “shakiness” this week. However, I have a sinus infection that has probably contributed to this. I am now on antibiotics and am able to continue my treatment at the same time. All of my medications are very drying and the humidity is very low here, so this has most likely contributed to the sinus problem. We hope the purchase and use of some humidifiers in the bedrooms will benefit all of us.

My PMD (primary care doctor) ordered some blood work for me this week. She covered all the necessary tests for a CBC (complete blood count) to track my WBC (white blood cells), RBC (red blood cells) and platelets after 2 weeks on my treatment, and also to satisfy follow-up reports for upcoming appointments with the Rheumatologist and Cardiologist. We killed 3 birds with one stone, so to speak. When compared to my last CBC on October 8, my RBC is holding steady and my WBC has gone down again, but not as low as it has been. The concern is my platelets. Although they have dropped dramatically, they are still just above normal range.

Today begins week 3. It’s steroid day again – the day I have the energy to do a little housework or some shopping, not to mention the 18-inch thick file of medical bills, insurance forms, general information about my cancer and treatment, and contact information of various care providers and pharmacies that needs weekly attention.

In addition to continued prayer for God’s healing touch, please pray specifically this week for: 1) my platelet count, that it won’t drop below normal before I have my week off of my cancer drug and the numbers can recover; 2) that my body will respond quickly to the antibiotics and my head will clear.

Thank you for your partnership with us through your prayerful support.

Week 1

It has now been one week since I began treatment. As predicted, I didn’t sleep much the first two nights due to the steroids. I didn’t really experience any other side effects; just felt like I had a little more energy. I now have a prescription for some sleeping medication to counter act the effects of the steroids. I’ll only need to take this medication for 1-2 nights; then I should be okay on my own again the rest of the week. I’ve tolerated the first week fairly well. Fatigue is my constant battle, but it isn’t any worse than before treatment began. There have been some times of dizziness, but not often. The most noticeable side effect at this point is the muscle aches, which are mild. There have been “prickly” sensations in my feet during the night at times, within hours of taking my medication that indicate nerve involvement. Neuropathy is a side effect that will be closely monitored and my dosage will be adjusted if it becomes an issue.

I’m a great believer in drinking lots of water and that has served me well. Fluids are extremely important with my therapy and I can definitely tell a difference in how I feel in relation to the amount of fluids I’ve consumed.

Today begins week 2.

Thanksgiving

I love Thanksgiving! It’s a holiday that’s all about leisurely enjoying a meal around a table with family and friends. No gifts required; no special clothes to be purchased. It’s all about preparing special foods and time together and, of course, being thankful.

I remember many happy times growing up and enjoying family meals at my Grandpa and Grandma Ebersole’s. I used to go help Grandma set the tables– there were usually 40-50! Happy times and good food! Over the years, I gleaned much wisdom from my Grandma. But, I remember well her simple advice upon my marriage – “Cook lots of good meals and always have a smile.”

In spite of my battle with cancer and the unknown road ahead, I have much to be thankful for this year.

I’m thankful for my husband, children and new grandson who are all such a blessing.

I’m thankful for new “friends”:

Ajay, Bruce, Carolyn, Gisela, Heidi, Jack, Jane, Jeff, Jennifer, Pam, Randy, Stacey, Steven, Timothy – Their names all end in MD or RN or some other professional medical designation!

Most of all, I’m thankful for the ministry of the Body of Christ through the power of the Holy Spirit. I have truly experienced the mysterious power that is released through your prayers. Though you are not actually in my presence, it’s a miraculous thing to physically feel the love, support, hope and encouragement that your prayers produce in our lives. When I reflect on what Steve and I were experiencing back in June during those first dark days of diagnosis and were facing everything alone, I am amazed at how far we’ve come since then.

There was a quote on my refrigerator for years that is now gone. I remember it well, but not the person whose words they were (remembering names is becoming increasingly more difficult “at my age”!):

Prayer doesn’t prepare us for the greater work; it is the greater work.

Thank you for being a part of the greater work in our lives!

Happy “American” Thanksgiving! To our international friends, we remember you with thanksgiving today as well.

Welcome to our World!

Ty Nielsen Rosten made his grand appearance at 2:40 pm this afternoon, November 18, 2007, his mom’s birthday!

Vital statistics:

weight 7 lbs. 12 oz; length 20 ½”

Proud Parents: Holly & Jeremy Rosten
Even Prouder Grandparents: Kati & Steve Rosten

GO!

My morning started out with my specialized eye exam that showed a “fluid vacuole” in my right eye, which has caused a little larger than normal blind spot. My ophthalmologist suspects that it will resolve on it’s own once the cancer is dealt with and my body is healthy again. Another good report!

As secondary problems continue to arise in my body due to the cancer, I am relieved to finally be at the starting point of my treatment.

Jen had a big breakfast waiting for me when I returned home and then I washed down the 10 little pills that comprise my steroid dose. I felt well prepared and confident as I popped those first few pills that signified the beginning of my physical battle with the cancer. My prayerful battle continues to grow and become more confident as well. After pausing to absorb the momentous occasion and preparing for what might lie ahead, I found myself asleep on the couch within two hours! Now don’t get excited! I know that I’m not going to stay that fortunate. It’s evening now and I’m starting to feel “antsy”. I will take my cancer drug this evening as it generally causes “drowsiness and dizziness”. We’re hopeful that the effects of one drug will offset the other; although I am prepared for an “all-nighter”! I do have sleeping pills, if needed, but want to go through this first week without them to see how my body will respond to the two drugs.

Those who know me well know that I have always had an interest in the medical field. My curiosity has served me well as I have traveled this road of medical issues for myself. However, I am amazed at all the twists and turns that this cancer road has taken me as issues secondary to my particular type of cancer have developed. Two things I’m watching for the Lord to reveal: 1) how He is going to use this trial in my life to enable me to minister to others; 2) when He will release me to return to my beloved choirs and the students whose love and prayers are so precious to me.

Thank you for your notes today, and earlier this week that always bless me. I will try to respond to as many of your notes as possible, but if I don’t manage to get to everyone, please know how much I appreciate hearing from you!

Set!

Everything is in place for me to begin treatment tomorrow. I had hoped our grandbaby would have arrived before I began, but maybe he wants to be born on his mom’s birthday on Sunday.

Talked to the cardiologist’s office today and my stress test was normal. That’s a good report.

My eye exam told me what I already knew – that I need a little change in my prescription. I am returning first thing Friday morning for one additional test to see why the vision in my right eye has become quite a bit worse than my left. I’ll probably hear the familiar phrase I hear often lately, “At your age……”!

Ready?

My drugs finally arrived today! I wish treatment was finishing just before the holidays instead of just beginning. However, I’m just glad to finally get going with treatment. I feel like the last several months have been kind of a “honeymoon” from facing the realities of my disease; although, there were constant reminders due to my limited stamina and energy levels. Now it’s time to go to “work” and deal with the realities of the disease and treatment with its side effects. Please pray for these to be minimal.

Some encouraging news regarding payment of my drugs: About 6 –7 years ago we purchased a supplemental benefits policy that provided coverage for cancer. It fills in some of the gaps that our regular health policy doesn’t cover, such as co-pays for procedures, transportation costs for treatment that is over 50 miles from home, and some additional coverage for treatment. We were able to confirm this last week that they now cover Revlimid! However, the amount of their reimbursement is open to interpretation, so we don’t know how much it will be. It could be anywhere from $250.00 - $5,250.00. Please pray that they will interpret the policy for the $5,250.00 amount!

Today, I’ve already made 3-4 phone calls trying to track down the receipt for my drugs. Nothing was included in my package. I paid for them over the phone with my credit card and now I need to send the receipt for some reimbursement, which we hoped to receive before we had to purchase the next months supply. One person told me it would take two weeks to arrive, but did give me the number for the billing office to confirm. I’ve left messages and emailed, so we’ll see what happens. I’ve learned over the past several months that everything seems to take lots more time than you think it should.

My nuclear stress test on Monday was quite difficult. I thought I was going to collapse before it was over and have not felt well since. I’m anxious to hear from the cardiologist for reassurance before I begin treatment. I am very anemic due to the cancer and strenuous exercise creates the need for more oxygen than my body can easily provide.

Yesterday, I went ahead and got my flu shot. After a lot of research and discussing the options with a number of people, it was determined that I needed to take every precaution to stay healthy as serious illness in the middle of treatment could potentially be life threatening for me. I really haven’t felt much in the way of side effects as I have in the past. I still just feel like I did after the stress test on Monday.

Did you know that with a mitral valve leak you can’t have your teeth cleaned or have any other dental procedure done, without taking antibiotics before the procedure? Fortunately, I was aware of this. Unfortunately, my cardiologist never said anything about this. Fortunately, I have a standing order for antibiotics, so I was able to take the required medication before my appointment yesterday. My hygienist told me they have a great deal of difficulty getting the local cardiologists to remember to tell their patients about this, as the dentist will not proceed without the required medication on board. She also gave me the name of some tooth care products that will help protect my teeth from the drying effects of my cancer drugs.

That’s your medical update for today from my little corner of the world. Thanks for reaching into my little corner with your messages of love, support, hope and encouragement!

The Domino Effect

I’ve spent a great deal of time on the phone the last few days. Several of my appointments had to be changed for various reasons and then there would be conflict with other appointments that then had to be changed. Add to that, all the phone calls regarding my medication. We’re hopeful that my medication will be here next week. We’ve been able to find it for around $7,000 a month, the original cost we were quoted by Stanford.

Saw the cardiologist on Friday. I have a small leak in my mitral valve, no other damage was seen at this time. She’s glad to have a base line analysis of the condition so it can be monitored. I will go Monday for a Nuclear stress test to determine if there is any heart disease present. Tuesday I get a flu shot and see the dentist. Wednesday I will be at home dealing with the effects of the flu shot. Even when I was healthy I would run a low-grade fever and feel “fluish” for a couple of days. Thursday is my final physical therapy appointment at which time he will give me a home exercise program to continue using. Thursday afternoon I will get my eyes checked. I think that just about does it. I think I've had every body part and organ examined over the past 6 months! I guess you could call this my 100,000 mile check up!! If all goes well, I hope to begin treatment on Friday or Saturday. At last!!

Steve will have oral surgery on Friday. Most of you know that two of his front teeth were broken off at the gum line when he had surgery for a nasal polyp last December. He has spent the past year enduring the process of having implants to replace them. He is now ready to have the gums opened and a “plug” placed in there to prepare for actually getting his new teeth. Hopefully, he will have his new teeth by Christmas.

Thank you for your continued prayer support! Please pray this week that my medication will actually arrive, that my treatment will progress without experiencing any adverse side effects and for Steve’s oral surgery on Friday.

Stanford is a go!

Monday turned out to be a productive day! I received a call from Dr. Coutre’s nurse just before noon and by 5:30 in the afternoon many things were in place toward receiving my meds! She accomplished in one day what still hasn’t been completed over the past several weeks by my onc doc’s office here. She gave me a close estimate of the cost for my drugs and I should have a definite price sometime today. The cost is what we initially expected – around $7,000.00 per month. Some assistance with cost has been located, but we won’t know exactly how much assistance we’ll receive until we’ve actually purchased the meds and applied for reimbursement. There are other programs available that provide assistance for chronic illnesses and we can apply for further assistance anytime, but at least we can go forward now with getting treatment started.

I have to register again as a Revlimid recipient as the nurse informed me that the registrations expire after 14 days if you haven’t filled the prescription. That means the registration I completed for the oncologist here has expired and would have to be completed again anyway.

I was told I don’t need to have an oncologist here locally. We can use my primary care doctor (PMD) unless she would prefer we have an oncologist for emergencies. I’m waiting to hear from my PMD regarding her preference. Labs only have to be completed once a month when I go to Stanford for my appointments. It is possible that I would have lab work completed every 2 weeks during the first couple of months, but those can be done here.

Today is my echocardiogram to see what this little murmur is all about that has developed recently in my heart. Also, more x-rays for my rheumatologist.

We are encouraged that things are finally moving forward!

One Step Closer?

Last Friday, Steve and I drove down to Stanford for a patient/caregiver symposium that was arranged by the Multiple Myeloma Research Foundation. There were 5 different doctors who spoke, each a specialist in myeloma, including the doctor I had seen at Stanford. On Saturday, they were all speaking at a continuing education seminar for oncologists and oncology nurses. They were from some of the top cancer research centers in the country – Stanford, Mayo Clinic, Cedars-Sinai, MD Anderson, and U.Wash., Seattle. It was a most informative and encouraging evening. With the discovery in recent years of new therapies, it gave us such hope for the future living with what is now being classified as a “chronic” disease. Stanford is doing the research that is looking for the stem cell that is the cause of myeloma. I sat there all evening trying to absorb as much information as I could (hooray for hand-outs!), and becoming more convinced that I needed to go there for treatment. There was a continual prayer in my heart all evening that it would work out for me.

One thing that we learned is that the “pulse” therapy with steroids is considered “old school” now. That is the treatment my first oncologist recommended as induction therapy. Research has shown that lower doses of steroids along with the new drugs is just as effective without the terrible side effects of high dose steroids.

We had the opportunity to speak with Dr. Coutre personally following the meeting. He apologized that he hadn’t had time that week to respond to my email, but that he would have his nurse contact me to make arrangements for me to receive my treatment there. I would only need to go down there once a month, but I do know there will need to be some arrangements made here locally. Please pray I will hear from her within a few days, so we can move forward with this.

When I first set up this blog, I thought it would be a means of communication as I journeyed through treatment. Up to this point, it has been about my journey TO treatment! We couldn’t have made this journey without your prayerful support!

Here we go 'round the mulberry bush......

Where do I begin to summarize the events of the past two weeks?! I still do not have my medication for treatment, nor do I know the exact cost. Over the past week alone, I’ve been told it costs anywhere from $2,500.00 to $15,000 a month and our insurance will not cover it. I have been told twice a pharmacy would call me with a quote and I’ve not heard from anyone. Also the Nurse Practitioner at my oncologist’s, who went over my treatment plan and dosage schedule, gave me a completely different schedule than what was recommended by Stanford. In my research, I cannot find this dosage schedule anywhere. All of the schedules concur with the recommendation from Stanford. She said she would verify with the doctor, but that it is the way they always do it there. We’ve never heard back from her and we are uncomfortable that it does follow Stanford’s recommendation and we cannot verify this info.

During a visit to the walk-in clinic several weeks ago for a urinary tract infection, the doctor there discovered a heart murmur. She could only hear it when I was sitting up. She told me it was important that I relay this info to my oncologist. I don’t know if my oncologist was distracted or being stubborn, but she did not listen to my heart while I was sitting up and so did not address the issue.

Today I saw my wonderful primary doc. It was so good to catch her up on all that has gone on since my last visit with her in July. She found the heart murmur right away and concurred that it could only be heard while I was sitting up. She is glad I’m not in treatment yet as she wants me to be seen by a cardiologist. She doesn’t think it is anything serious at this point, but it must be assessed prior to treatment and the future possibility of more aggressive treatments. She is uncomfortable with all the problems I have experienced (and am continuing to experience) with the current oncologist. My primary doc thinks I should reconsider going to Stanford for treatment. Also, there is a new oncologist in town that she would like for me to consider using or possibly this new doc would work in conjunction with Stanford.

I also saw my allergist today. He is a wonderful doctor and is the one who discovered the problem with my bone marrow last May and referred me for evaluation by an oncologist. He advised me to get out of town and go to Stanford for treatment.

At this point, we are going to contact the doctor I saw at Stanford and see what kind of arrangements could be made – do I need to have everything done there or could they oversee my care and possibly work with my primary doctor here for the weekly lab work and then go down there once a month for the actual doctor visit and more specialized tests.

We went for special prayer again on Saturday as we had reached our frustration point again and were really seeking the Lord about going back to Stanford for treatment. Even though I now have another specialist to see, we feel hopeful that some direction is beginning to be evident.

Steve & I are officially “old” people now as we went for a long, leisurely Sunday afternoon drive yesterday to see the fall colors in the mountains. Sure glad we’re not having our cholesterol checked this week as we enjoyed burgers, fries and milkshakes at our favorite little diner in the mountains!

We continue to be so encouraged by those who contact us in some way to remind us they are thinking of us and praying for us. God always seems to “nudge” someone to make contact at the most appropriate times. Thanks to each of you for your commitment to us!

Red Tape

It’s the waiting game again as I wait for all the red tape to be completed before receiving my medication. My cancer drug is regulated by the federal government and it has not yet received FDA approval for use as “front line” or “induction” treatment; meaning, use as the first form of treatment. There was such success with this drug (Revlimid) in clinical trials that the FDA allowed its early release for use only as a form of treatment for myeloma patients who have exhausted all other forms of treatment. There was such success at this level that it is now being moved up for earlier use. Now, even to front line therapy, but as such, the doctor and I both have many forms to fill out, not just at the beginning of therapy, but also, each month.

This drug is very expensive and my insurance does not cover it. The doctor’s office is petitioning the drug company on our behalf to see if there would be some financial assistance for us. Otherwise, it will be “out of pocket” each month. This is a matter that needs a lot of prayer right now!

I’ve been feeling quite good this past week and have been able to get out and do a few things. However, I’m sure that will end as soon as I get my required flu shot. Even when I was healthy, I would feel “fluish” for a couple of days. I can imagine what my reaction will be like now. So, I’m trying to arrange my schedule to have several days without any commitments, such as doctor appointments and physical therapy.

Yesterday was my final appointment with the orthopedist. He was happy with my progress, but also cautioned me to be very careful with the ankle. He said my ankle would be weak and quite tender for many months yet and so fitted me with an ankle brace for stability. I have 5 more physical therapy appointments and then will need to continue many of the exercises on my own.

The financial situation regarding my cancer drug needs a lot of prayer over the next few days! And, of course, we’re continuing to pray for healing so it won’t be needed!

Designer Drugs

It’s a busy “medical” day for me – 2 doctors appointments and physical therapy.

This morning I met with my oncologist to hear her confirm the diagnosis I had already received at Stanford last week of non-secretory multiple myeloma, and also to talk about treatment. She will treat me with their recommendation of the latest drug available for myeloma – Revlimid. Tomorrow afternoon I will meet with her nurse practitioner to go over the many details that are necessary to complete prior to beginning treatment – registering as a Revlimid recipient, instructions regarding the monthly survey I will be required to complete in order to continue to use the drug each month, lab schedules, appointments with the doctor, and I’m sure a list of other do’s and don’ts. It will probably be at least another week until I have all my drugs and schedule in hand and can actually begin treatment.

Also saw the nephrologist today regarding the cysts in my kidneys. He confirmed that they are not a concern at this time – part of aging! Ouch! But, he will see me again in 6 months to monitor them. He did tell me that myeloma patients have frequent urinary tract infections, which must be treated quickly to prevent spreading to the kidneys. He gave me a standing order for a particular antibiotic that I can take during my treatment if needed.

My ankle continues to slowly improve. The physical therapy has been very helpful for not only my ankle, but also for building up the muscles in the leg. My lower leg muscles atrophied quickly following the injury and were very weak. The ongoing struggle is to keep the swelling under control so the tissues can continue to heal without irritation. At my appointment on Friday, I could feel the damaged nerve that has been numb start to tingle when they were using the ultrasound on my foot. A good sign that healing is continuing to take place!


Thank you one and all for your continued prayers and messages of hope and encouragement.

Stanford Answers!

At last, we have some answers! Stanford has confirmed the initial diagnosis of multiple myeloma.

It was a long day as we made the 500 mile round trip and spent the afternoon in the clinic. When we left home this morning, all we knew was that we would be seeing a hematology specialist and that we were to arrive at 1:30. At check in, I was sent to the lab for a blood draw for a complete blood count and a comprehensive metabolic panel. We met first with the young doctor serving the fellowship and after she spent some time conferring with the specialist, they returned together. The labs were completed so they had the results with them. He confirmed the diagnosis and did explain, again, how complex my case was. And, as it turns out, he suspects I have an even more rare form of myeloma than “non-secretory”, called IgD. I know that means absolutely nothing to all of you, but it does mean something to me as I have researched this disease thoroughly over the past 5 months and it meant another blood draw following the appointment for him to run a specialized test to make that determination.

What we really wanted to hear, though, was a treatment plan. His preferred choice of treatment is with a brand new drug that is in a class of drugs called “antineoplastic immunomodulatory”. It is in pill form and, although there are some side effects, they are nothing compared to standard chemotherapy. There would also be a once weekly high dose of steroids. Because I have some markers for poor prognosis, standard therapy would most likely not be as effective. This new drug (called “Revlimid”) has a much greater chance of inducing a complete remission and, if I only reach a partial remission, a maintenance regimen can be continued for a period of time.

Now we wait for the report from Stanford to reach my oncologist here and for her to call to make an appointment to see me. Then, we begin the process of getting the insurance company to approve the use of this drug, which is quite costly.

We have finally crossed one hurdle but will wait again while all the paper work is processed and sent to the appropriate people. So again, I’m most likely 3-4 weeks away from commencing treatment.

Thank you all for your continued prayers and notes of encouragement! I have really been ministered to at my low points by reminders that you are thinking of me and praying for me and the spiritual insights you have shared.

Stanford again.....

I received a call from Stanford on Friday. The pathology report on the slides from my bone marrow biopsies is “inconclusive”, although they are leaning toward confirming the diagnosis of myeloma. At my first appointment, my medical history and exam were completed by a young doctor, who is currently serving a Fellowship in oncology. Once she had completed these two things, I was also seen by the staff oncologist who is supervising her training. The young doctor is also working with another staff oncologist who specializes in hematology. She will be in clinic with this specialist on Monday and because she had already seen me, he agreed to squeeze me into his schedule on Monday. If we weren’t able to be there on Monday, the next appointment would be October 22. Needless to say, we quickly arranged our schedules so we can be at Stanford again on Monday, October 8. This is the first time in many months that anything has progressed this quickly!

Thanks for the extra prayers this week! Please pray that we will finally have some answers and that it isn’t too much to hope for a treatment plan on Monday!

Stanford - Part 1

We have returned from our trip to Stanford University Medical Center and the craziness of the city traffic. By the time we left the city, we were all wondering if we would need to see a cardiologist!

As I expected, we still do not have any answers. My case is “very complex”. Even though the slides from both of my bone marrow biopsies were sent to them 2 weeks ago, their Pathologist still hadn’t issued a report of his findings. They were also missing a key lab report that seems to have gotten lost during my change of oncologists. Consequently, that blood test had to repeated, as well as updating some others. I managed to track down the illusive report at the lab where it was performed and due to a misspelling of my name, my new oncologist may not have been able to locate it. Even though Stanford is running the test again, they still want the original report, as it will tell them how much the cancer has progressed since it was first done in July. I did receive a phone call this morning confirming that my local oncologist had obtained the report and faxed it to Stanford.

My Stanford doctor assured me that they would call me by the end of this week with an answer regarding my diagnosis. She also assured us that due to the complexity of my case, our decision to seek another opinion was a very good decision. They did tell me they are leaning toward confirming the original diagnosis of myeloma, but did not want to say for sure until the report was completed by their Pathologist. If it is myeloma, they will set up an appointment for me with their myeloma specialist there at Stanford who will determine the best course of treatment for me and then work with my oncologist here in Redding. So, we are anticipating that it will be at least another month before any kind of treatment would begin.

I must admit that I certainly do not feel like "Suzie Sunshine" today. I keep reminding myself that in spite of all the delays God has everything under control, but some days I have a harder time hearing myself. There are other problems beginning to develop in my body due to the cancer not being treated and it makes it a bigger struggle to keep my eyes on the Lord.

Escape!

With the doctor’s permission and a list of “do’s and don’ts” and “call me if’s….”, Steve and I were able to leave town for a week and celebrate our 32nd anniversary with a trip along the Oregon coast. The weather and the scenery were beautiful! We left town Saturday morning with only 2 things scheduled – to arrive home Friday night, and to spend the first night visiting my oldest brother and his wife, Ernie and Crystal. No, they don’t live on the coast of Oregon. They actually live about 200 miles inland! But we decided to take advantage of the opportunity to go visit them and then enjoy the drive back to the coast along the Columbia River.

We felt the Lord’s Hand of blessing on our entire trip and especially on Thursday, our anniversary day. That morning began with a testimony we “just happened” to find on the TV of a pastor in Bakersfield, Calif, who was sharing about his struggle with leukemia and how God had preserved his life well beyond the number of years the doctors predicted. We were both really blessed by his entire message.

The photos show our great adventure riding across the Oregon Sand Dunes. They are amazing and you truly can’t appreciate how massive they are without getting out there and experiencing them. What a marvel God’s creation is!

Our trip was a great escape from all that faces us here and was certainly a much more enjoyable way to spend the final week of waiting for my Stanford appointment than sitting at home.

We leave this afternoon to make the 4-hour drive to Palo Alto (south of San Francisco), so we are there for my Monday morning appointment. We’re ready for answers, but are quite certain we’ll have to wait until the Stanford doctor reviews everything following my appointment, consults with her colleagues, and then consults with my oncologist here.

Please pray that we will soon have some answers!

It's a wrap

Saw the orthopedist on Monday and was referred for physical therapy. He will follow up with me in a month. I had my first physical therapy appointment this morning and now have exercises to do at home in between appointments. The therapist advised me to keep my ankle wrapped with an ace bandage as it will heal faster if I can keep the swelling under control. The swelling was contributing to the pain and weakness I was experiencing last week; it was irritating the soft tissues. There appears to be a nerve that was damaged as I have a numb spot on my toes, but we’re hopeful that “feeling” will return as the swelling subsides and healing continues. I will return for therapy again on Friday morning.

Jennifer continues to improve and her recovery seems to be going quickly for what the usual course is for mono. She sleeps a lot at night, but her afternoon naps seem to be happening every other day now instead of everyday.

No news on my cancer. It just continues to eat away inside me while we wait for our appointment at Stanford, October 1. We continue to rest in the fact that the Lord is in control in spite of what appear to be frustrating set-backs.

Progress?

Things are finally moving forward again now that my oncologist has returned from vacation. She promptly got the situation straightened out at Stanford and they called yesterday with a new appointment and with the correct department this time. So now I will be seeing a Bone Marrow Specialist on Monday, October 1.

The swelling in Jennifer’s throat has gone down considerably. Now that she is no longer on the prednisone, she is well aware of the fatigue from the mono, but she does seem to be improving a little each day.

The healing in my ankle seems to have regressed over the last several days. Since removing the cast there has been a really tender spot on the top of my ankle right where it should bend. It seemed to be getting better, but now it is much worse and my ankle feels quite weak. I’ve gone back to walking some with the crutches just so I don’t have to put full weight on it all the time, and I don’t want it to give out on me and have another fall. I see the orthopedist on Monday and am anxious to know his opinion on my progress and in particular, this one location of movement restriction and pain.

Today was my monthly gamma globulin infusion. These infusions kept me healthy all last year so I am grateful we received an approval from the insurance company for another year. Continuing with these infusions will be a critical part of my treatment plan.
I am given a dose of dexamethasone (a steroid) just prior to my treatment to reduce the possibility of a reaction to this blood product. Consequently, I sleep very little or not at all the first night. Since I need to drink lots of fluids for several days following, I just sit up, watch TV or read a book, and drink, drink, drink.

I have a great team of nurses and staff at the infusion center who have become friends I look forward to seeing every month. The pleasant environment has certainly minimized the dread of being hooked up to an IV for 6 –6 ½ hours every month.

The Lord responds to your prayers and supplies the strength and courage we need to live each day. We are grateful for your dedication to pray on our behalf especially with the delays we have experienced that have brought times of frustration. However, we have been filled with peace to trust His timing in all things.

The week that was!

It has been quite a week! The high point, however, was the baby shower for my daughter-in-law, Holly, on Sunday. (Photos coming soon!) The rest of the week wasn’t so good. Jennifer has been really sick for a couple of weeks and Johanna took her to the walk-in clinic 3 times this past week. First time the diagnosis was strep throat and she was sent home with penicillin. After 3 days she was worse so she returned and was sent home with a stronger antibiotic. She continued to get worse and on Sunday morning when preparations needed to be done for the shower that was in the afternoon, Johanna returned to the walk-in clinic with her for the 3rd time. While they were gone, my wonderful husband helped me prepare the food for the shower. He learned many valuable lessons in food prep, that he may need to know in the future, and his hands have never been so clean! She was sent to the hospital lab for some tests and was sent home with pain pills. Johanna returned home just in time to go to the shower with me and poor Jennifer had to stay home.
We had a wonderful time at the shower making sure my grandson will be suitably outfitted! By the time we returned home, Jennifer’s throat was almost completely swollen shut and her tonsils were terribly inflamed and infected. So Team Rosten (Mom, Dad, Johanna, and Jen’s friend, Jeff) loaded up and headed for the ER. The waiting room was packed so we braced ourselves for a long wait. However, within a very short time we were seeing a nurse for evaluation (triage) and were taken in for care. The nurse looked up the blood work from the morning and said that it hadn’t been marked for a rush and wouldn’t be back for several days. Great! Also, they hadn’t ordered a spot test for mono, which she was quite sure was Jen’s problem. The walk-in clinic had told her they would order the spot test in the morning……hmm. Anyway, she got a shot of steroids to keep her throat from closing up and then my poor baby got a terrible, burning muscle spasm from the shot! As if her throat wasn’t painful enough. We are relived how quickly she is improving now as she continues on the prednisone and antibiotics for several more days. She was positive for mono so her recovery time is unknown.

In the meantime, my paper work arrived from Stanford. In looking it over, I became quite confused. My appointment was with the bone marrow transplant department and they were requesting copies of tests I haven’t had completed and contact info for all my siblings for tissue matching! My oncologist has just returned from vacation and someone finally returned my call Tuesday afternoon regarding the situation. Sure enough, my appointment was made with the wrong department! So, I no longer have an appointment on the 24th and several weeks have been wasted waiting. My oncologist was going to personally call and try to get this all straightened out and get a rush on an appointment for me. I think she thought I would be seen while she was away on vacation and be ready to move forward when she returned.

Another frustration this past week – In order to determine how long this disease has been brewing in my bone marrow, it was necessary to obtain all my medical records back to the point where there was a normal, healthy blood count. Unfortunately, in February 2005, just as my numbers were dropping and were at the bottom of normal, our wonderful family doctor became ill. We waited 6-7 months hoping he would be able to return to his practice, but at the end of that time he had to retire. It took several more months to obtain our records and get appointments with another doctor. Steve & I ended up seeing 2 different doctors. He has had a good experience and mine was not so good. Consequently, I was without a primary care doctor for a couple of years and just used the walk-in clinic when I was ill. It has taken me several months to get my records from the 3 visits with this interim doctor. She did a lot of lab work because I told her how fatigued and weak I felt. She said everything was fine; I just needed to lower my cholesterol, lose some weight and exercise more. Isn’t that what we all know anyway?! Well, I finally got my records only to discover that my labs were not normal – my white blood count, my red blood count and my immunoglobulins were all way below normal! I should have been referred to a specialist 1½ years ago!

Needless to say, I have been quite discouraged at times over the last few days, but am doing better. I keep reminding myself (and my family and friends keep reminding me!) that in spite of these frustrations and delays, the Lord has me in the palm of His hand and the timing of all things in my life are under His control.

I don’t know how people cope with life’s frustrations without knowing the Lord and having the prayer support of friends and family. It is my lifeline especially at this time!
When I was at my lowest at the end of last week, “perfectly timed” phone calls and cards in the mail brought hope and encouragement. I continue to be touched by the way God speaks through my friends and family just when it is needed most!

Singing the Blues

It was a sad day for me today as I realized it is the day I would be registering the Red Bluff Choir and tomorrow the Redding Choirs for our fall semester. I always look forward to choir beginning in the fall and seeing my returning members and anticipating new ones joining us. I will miss the busy process of choosing music suited to each choir and the task of starting our rehearsals with the basics of learning the notes, the words, the interpretation, the memorizing, and finally rehearsing our stage presence. The reward for our labors is the final product so beautifully presented by my young students and enjoyed by our many guests. And, yes, there are scary moments when I wonder if we’ll be ready for our performance!

I know that the process of committing their music to memory has filled their hearts with many songs that can be recalled and enjoyed this Christmas even though I will not have the opportunity to fill them with more.

My most recent blood test done last Friday showed numbers that have dropped significantly – lower than they were initially when I was referred to a hematologist last June. Needless to say, I have been more fatigued. I will have to be even more careful now about staying healthy and staying away from those who are ill. School began here a couple of weeks ago and I remember how that always brought the beginning of colds and flu that would continue through the winter.

Please pray that the Lord will sustain my health as we wait for our consultation appointment with Stanford University on the 24th, and we wait upon Him for His healing touch.

Independence Day

After a summer of being completely dependent on my family, I drove myself to the doctor today and did several errands all by myself! I was quite pleased by how well I got along even with the thermometer creeping past triple digits by the time I got home. Steve met me for lunch and then helped me pick up a “few” things at Costco. Any of you who regularly shop at Costco knows that a “few” things always ends up being way more than planned.

I am also free of my boot-cast!! Hooray! And just in time as I noticed a heat rash starting on my leg today! My x-ray looked good today and healing is continuing in the bone. When discussing the possibility of a brace, the doctor decided that he wants me to begin to get some natural movement and mobility back in my foot and ankle. However, I am to use a cane for some support and stability.

We had our call from Stanford this afternoon and I’m scheduled for a consultation on September 24. They will obtain the slides from the two previous bone marrow biopsies to review before deciding if another biopsy is needed.

As the long summer of uncertainty continues into the fall, I am grateful for your continued communications of various kinds that keep reminding me that many are praying and that the Lord is ultimately in control of all these delays.

Off to the big city!

I spoke with my new oncologist this afternoon. She had my pathology reports reviewed by yet another pathologist. Then my case was reviewed again by all the doctors in her practice at their weekly meeting, called “Tumor Board”. They are unable to make a definitive diagnosis as there are characteristics of two very different kinds of abnormalities evident indicating either a lymphoma or myeloma. So we’re basically back to square one and they’re calling in the big guns – We’re off to Stanford University Medical Center in Palo Alto (just south of San Francisco) to see a specialist in bone marrow disorders. I don’t know if all of the many tests I’ve had done will be repeated, but I was told they would probably do another bone marrow biopsy….ugh…. But, whatever it takes to get some answers.

I have had a good day today – I didn’t require a nap! Johanna and I went into town this afternoon to tour the new library in Redding.

While we pray for answers we also continue to pray for healing.

Is it a boy or a girl?

Remember the good ole days when the gender of a baby was not known or announced until the actual birth took place? And, nurseries were decorated in “neutral” colors that were not gender specific, such as green or yellow? With the technology now available, ultrasounds are a part of routine obstetric care. But even with this advance in technology there still seem to be surprises.

As most of you know, our oldest son and wife, Jeremy and Holly, are expecting our first grandchild in November. Their regular doctor was on vacation in July so they saw another doctor in the same practice. As a result of the ultrasound done at that appointment, they were told they were having a girl. So, Holly and her Mom got busy shopping and decorating and fixed up a darling nursery for a little girl. Jeremy brought tears to my eyes when he told me they were naming her “Mya Kathryn”, but I quickly recovered my sense of humor and told him he’d better make sure he spelled it right if they were naming her after me. Well, their regular doctor was back from vacation and did another ultrasound yesterday and has confirmed that they are definitely having a boy!! I guess he was being shy last month! They are happy the baby is healthy and growing, but they are making a big adjustment right now. Jeremy is thrilled they are having a boy and Holly has to turn the nursery into a boy’s room - not to mention picking a new name.

Hands Free Walking

Since seeing the orthopedist last Thursday, I have been gradually weaning myself from the crutches. Yesterday was my first complete day without crutches. Yeah! However, the height of the cast means I either wear a shoe of equal height on my right foot or suffer the complaints of my back from being off balance!

The increased mobility has made it possible for me to get around the house easier and be able to do a little more – like help with cooking and housework. I never thought I would have such an appreciation for the ability to do minimal housework! However, I do tire easily and nap frequently. When I’m sitting, I feel like I have lots of energy, but when I try to get up and do things, I realize how little energy I really have and it can be discouraging. I try to pace myself each day with a list of “active” projects interspersed with “sitting-down” projects. However, the “sitting-down” projects often turn into naps. At the end of the day I try to look at what I have accomplished rather than what I didn’t get accomplished.

Many thanks again for your continued prayers and messages of hope and encouragement.

Three Heads are Better than One

The oncology doctor from whom I sought a second opinion has obtained all of my records and discussed my case with her associates – and we all know 3 heads are better than one! She has assured me there is no immediate rush for treatment and since she is leaving on vacation, she will see me again the middle of September. While she is gone my pathology reports will be reviewed again by someone (I’m not sure who, at this point), to try to confirm the initial diagnosis of nonsecretory myeloma and if not that, to try to determine what exactly is going on in my bone marrow. Knowing exactly what type of cancer is critical for determining treatment. I will also have lab work done to monitor my blood counts. I like her very much and have decided to change my care to someone who is more compassionate and more thorough in assessing my total health. Also, we are more comfortable with the fact that she is part of a group and there will always be someone available even when she is not.

One item that was not even mentioned by my original oncologist, are the cysts that were discovered in my left kidney on the CT scan. She has addressed the issue and is referring me to a nephrologist (a kidney specialist). This is something that she would like to have assessed prior to my next appointment in September.

There is some good news today. The orthopedist was pleased how my fracture is healing and I can now begin to put full weight on my left foot and use the crutches less. He said there will be some pain – tenderness and aching – but not to let that stop me from getting more weight bearing on my foot. I will see him again in two weeks and if all continues to go well, he will put me in a brace and I can lose this big boot-cast. This is a much improved report from what I was told initially by the first orthopedist.

So, today we can praise Him for the healing in my foot! And soon, I am hopeful that we can all praise Him for the healing in my bone marrow!

Good Times in Seattle

Early Thursday morning, August 9, Steve & I headed out for Seattle. I sat in the back seat with my foot elevated for most of the trip, but was glad to be able to drive for a couple of hours to give Steve a break.

It was so great to get out of the house and attend some fun family events this past weekend – a surprise 60th birthday party for Bob Smith (husband of Steve’s cousin, Darlene) and the wedding of another cousin’s son, John Crozier. We also enjoyed spending some time with Steve’s sister and husband, Carol and Dave. Thanks Bob and Darlene for the great day on your boat cruising around Puget Sound! It was most interesting, however, getting me down the ramps to the boat in a wheelchair as it was too far for me to navigate on my crutches. I then carefully crawled onto the boat while everyone hovered around me ready to help. The fresh air and warm sun were invigorating.

Today was a sad day for me as I notified my families that choir will be on hold for this fall semester. I’m still hopeful I can return to my regular activities after the holidays, but I suspect that it will be a longer break than just one semester. The middle of August usually finds me looking through my files deciding about Christmas music so I am ready to begin rehearsals in September. It feels strange to not be doing that and I find myself thinking about various songs that would be good to use this year. A local magazine interviewed me several months ago for an article they were doing on children’s choirs in the north state. It was just published in this month’s issue and has generated phone calls of interest. Although I am taking names for the future, it makes me sad not to be able to enthusiastically tell them we will be starting rehearsals in September.

More info tomorrow after I see the orthopedist for my follow-up appointment on my foot.

The Waiting Continues.....

Steve and I were able to attend the early service at our church on Sunday. I haven’t been in church since before Memorial Day and Steve has only gone a few times without me. We arrived just as the service was beginning only to find no disability parking spaces available. We’re finding this to be a common occurrence when we’re out and about, and have become quite adept at getting me in and out of the car in a “regular” parking space. However, this is no small feat when we are driving our big Ford Excursion and we are somewhere that I need to use the wheelchair! But with the help of a friend (who just happened to be outside the church as we arrived), we were able to get me unloaded and into the church while Steve found a place to park. As he wheeled me back to the car after the service, we were both amused that he had parked in the “visitor” spaces. We felt we probably qualified since we have been in church so seldom in recent months!

It was very uplifting to be able to sing and worship and be there to hear the sermon in person instead of listening from the church’s website. We slipped out just as the last song was being sung to minimize my exposure to so many people. Several had been quite ill this past week, including our pastor.

Another church in town has prayer for special needs every Saturday morning, so Steve & I went for prayer on Saturday. It was a special time and so good to feel the Lord’s presence. We enjoyed some time alone afterward by going to breakfast and sitting and chatting over a cup of coffee.

It was a long day yesterday, which started with our first appointment at 8:00 am. And after this long day, it seems that we are still in a holding pattern. We saw a doctor from the other oncology group in Redding, who was unable to give us an opinion regarding my diagnosis as she needed more detailed records. We’re hopeful those will be delivered to her in a timely manner. She will then discuss my case with the entire group of doctors in her practice and possibly order further tests. She will contact me next week to set up an appointment prior to her departure for vacation on the 27th of this month. Consequently, treatment will not begin until we have received this second opinion and her suggested treatment plan.

In the afternoon, I had a bone density scan and was reassured by the technician that my bones were healthy and within the normal range. A full report from the radiologist will be sent to my primary care doctor by the end of this week. This was good news!

Another piece of good news was that my white blood count was up a little – higher than it’s been since this process began. Maybe the supplements I’m taking are helping.

Next week I will see the orthopedist and will have an x-ray to see how my bone is healing. I am able to put some weight on the toe of that foot now and it has made it much easier to get around. I seldom have to use the wheelchair now.

In the meantime, this new doctor encouraged me to be cautious around those who are ill, but to go ahead and enjoy getting out a little more. So, we are taking off early Thursday morning for Seattle to attend a family wedding and will also have the opportunity to see some of Steve’s relatives, in particular, Steve’s sister and husband who are coming from Minnesota.

Many thanks again for your phone calls, visits, cards and emails! They always brighten my day and encourage me that I am not alone in this battle.

Decision Time

This next week will be decision time. On Monday, we see the other oncology group in Redding for a second opinion regarding treatment. Later the same day, we will also see the oncologist who diagnosed my condition. He wanted me to begin treatment right away, but we are still waiting for approval from the insurance company on some of the medications he has ordered. Also, we have more questions we need answered before I begin treatment. All of this delay has given my bone a little more time to heal. As of today, I am able to begin putting some weight on the toe of my cast. It certainly does help in regards to balance and eases my mobility with the crutches.

We are scheduling two phone consultations with doctors who offer alternative/complementary care. We have been supplied with a lot of information from friends and have done a great deal of research ourselves and have decided on these two particular doctors. Hopefully, they will be able to assist us by suggesting products that will help me maintain good health throughout treatment and will support the healing process.

My sister-in-law, Louann, is here from Portland this week helping us. Johanna is taking a much deserved break and finally has time to unpack and organize her things. She will leave in a few days to spend a week in BC visiting friends. Jennifer was just home a few days before leaving for BC for the wedding of a college classmate. She now has another bridesmaid dress to hang in the closet. Although, this one is actually one she could wear again. She is trying to get unpacked and organized since moving home from Colorado so she will be ready to be “on duty” when Louann leaves this weekend.

Thank you for your continued prayers and support. Prayer focus for this week, in addition to healing grace, is that we will make wise decisions next week.

Two Weddings and a Funeral

I have been feeling a little stronger the last few days and have been able to get around quite well on the crutches. So, we decided to attend two weddings of close family friends. The first one, on Saturday, required a 4 ½ drive hour and an overnight stay. It was a beautiful wedding and the overnight stay in a quaint, old bed and breakfast was a welcome retreat from the confines of the house. How I wish I could have enjoyed the dancing instead of sitting with my foot up on a chair!

We returned on Sunday in time for a quick nap and then on to the other wedding on Sunday evening. This wedding was just a 40 minute drive into the mountains to the east of us. It was a beautiful outdoor setting at a ranch.

On a sad note, last week we learned of the passing of my Uncle Dale Flora. He lived a long, good life and was a caring, dedicated, and loving husband to my Aunt Mae (my Mom’s sister) who has Multiple Sclerosis. The funeral is Thursday in Medford, OR. Don’t know if we’ll be able to go – we just take one day at a time. After all, isn’t that how all of us are supposed to live?

Holding Pattern

Today we’re waiting for a call from the other Oncology group in Redding who reviewed my records at their weekly meeting on Tuesday evening. They are trying to make room in their schedule to see me next week.

We saw a different orthopedist yesterday. Steve and Johanna were with me at the appointment. We all liked him very much and will use him to continue to monitor my bones throughout treatment and the progress of my disease. He said if I could get one more week of healing on my foot before beginning treatment I would be able to at least put some weight on my toes by then. The ligaments and tendons are going to take several months to heal under normal circumstances. Although the high dose steroids, which are the initial treatment for my type of cancer, will slow the healing process significantly, being able to bear some weight on the leg and toes will be important and will aid the healing. And, it seems every new prescription that I bring home has a warning label that says, “May cause dizziness”. I certainly don’t want to be dizzy while hopping along on one foot with my crutches!

There is still quite a bit of swelling over the area where the bone is fractured. But the orthopedist reassured me that it was a small fracture and my bones looked healthy. I will be having a bone scan done in about 10 days to determine if there has been any mineral loss since my first scan was done about 5 years ago. This will also give us an idea of the health of my bones before beginning the steroid treatment. If they start to show signs of thinning, then medication can be started to help prevent that from progressing further.

My primary care physician has started me on a low dose of anti-depressants. This is an important part of my treatment as the steroids are given in a “pulse” cycle. 40mg for 4 days, off for 4 days, for three cycles, then I get 8 (or is it 10?) days off before I begin the cycle again. I’ll be wound up higher than a kite for 4 days and then dumped into the pit for 4 days. The anti-depressants will level out that cycle. In order to sleep during my 4 days on the drugs, I will have to take sleeping pills.

In the meantime, we have reviewed a lot of information for alternative/complementary care. We have ordered several kinds of special supplements and herbal remedies and are in the process of working out a diet plan. These will help keep my body healthy during treatment and, hopefully, contribute to healing.

Thanks again for your comments on my blog, your cards, emails, phone calls and visits. I feel so blessed to have such support and encouragement!

Family Pow-Wow

As of now, treatment has not begun and there are more rounds of doctor visits this week.

We all met as a family on Sunday evening to discuss my condition at this point: Do we choose to delay treatment for my fractured heel bone to heal? What about second opinions? Should we include alternative or complementary care? What should we expect when treatment begins?

My time has been consumed with seeking counsel from friends and acquaintances in the medical or allied health professions and doing many hours of research. So, this week, we see my primary care doctor again; get a second opinion on my fractured heel from another orthopedist; gather all my records to send to another cancer care team in Redding for a second opinion. Gathering all my records has been a challenge, as my oncologist has not supplied my primary care doctor with all of my test results. She has been very good about making sure I have copies of everything, which I have been told is important for me to have and carry with me whenever I seek any kind of treatment for any kind of condition.

The swelling in my foot has gone down, although it is not gone completely. The bruising on my foot and lower calf is slowly dissipating. Several times a day I take off my “boot” and massage my lower leg and tenderly exercise my toes and rub my foot, to stimulate the circulation and to promote healing. I’m getting quite adept at getting myself up and down the steps and stairs in our house and have improved enough that I’m able to use the crutches more and have parked the walker. I still use the wheelchair when we’re out of the house, as I do not have the energy to walk very far or very fast on the crutches.

There are times of great discouragement, but the notes, phone calls, cards, etc. always pick me up again and keep me going. It gives me the courage I need to fight the battle ahead.

Catch 22

My big outings for the week: Dr. Herold, my primay care doctor on Monday, to discuss her role in my care; Dr. Paul, my new orthopedist, regarding my broken heel. Both so young; both so personable and knowledgeable. No surgery will be done on my foot, but it will be 4- 8 weeks before I can put weight on my left foot. However, my onc (oncology) doc and my ortho doc talked yesterday following my appointment, and cancer treatment is going to begin next week even though my foot will not be healed and the treatment will significantly slow the healing process.

My initial round of treatment will be very high dose steroids. The side effects sound simply awful. Please pray that the Lord will protect me and keep the side effects to a minimum. I don’t quite understand how this type of treatment works for my type of cancer, but that is a question I am currently researching on line and will ask my onc doc before treatment commences.

I feel my head just spinning right now as I know the cancer will eventually invade and compromise my bones, but the first line of treatment will compromise my bones as well. My immune system is almost non-existent and my white blood cell count is very low, and the treatment will further suppress the production of both. Medicine is so baffling at times and we must remember the doctors are “practicing” medicine.

Highlight for the week - I was able to attend my "birthday club" gathering last night as we celebrated a birthday and also said good-bye to a friend moving out of state. This club began many years ago with a group of us who became friends through homeschooling. We have continued the tradition of celebrating our birthdays throughout the year with a ladies' night out. It has been a great way for all of us to stay in touch as our lives have gone in different directions as our kids have grown up, left home, married, etc. It was so good to be able to laugh and have a good time!

By the seat of my pants!

Those of you who have visited in our home know that you can’t go very far without encountering steps or stairs. This is quite a dilemma when you are already weak and then have to drag your body around on crutches. Since my heel bone is broken, I cannot put any weight at all on my foot and won’t be able to for several weeks. The crutches are seldom used as we have discovered that a walker is much more stable and easier to maneuver, although it has to be turned sideways to get through most doorways. But this didn’t help the stairway situation at all. It is quite a process that we have developed and one that is not tackled alone. I carefully sit down then slide my bottom down each step until I reach the bottom, at which point a family member is waiting with the walker they have already carried down and a helping hand to pull me up. It is quite a sight! Fortunately, I have several pair of capris that fit over my cast, but I never imagined that I would have to worry about wearing out the seat of my pants!

We’re grateful for the use of a walker and wheelchair (for journeys to the doctor) that we were able to borrow from a friend who was recently seriously ill. His recovery has progressed to the point these items were no longer needed and he was very happy to see them go.

So how am I really doing? Today I’m feeling good, but there were low points over the weekend. I just have to let the tears flow and then the most amazing thing happens – a note, an email, a phone call or a visit from a friend – a hug from my Heavenly Father!

Welcome!

Welcome to Kati’s Korner! This is my first attempt to keep up with my technologically savvy children (without whose help this would not be possible!). I hope this blog is a place you will visit often to keep up to date on my progress. I welcome your comments, emails, or phone calls, but hopefully this will be an easier and more efficient way to get information to everyone on a regular basis.

The Diagnosis

If you are reading this blog you probably already know that we received a final diagnosis on Wednesday, July 11th. I have been diagnosed with non-secretory myeloma, a very rare form of bone marrow cancer. Due to the rarity, there is little research data available and therefore, it is difficult to determine the prognosis. There are a couple of gene/chromosome markers which indicate that this is a more challenging cancer to fight. We are thankful that my bones and internal organs are not involved at this time.

Non-secretory myeloma means that the plasma cells in the bone marrow are not producing or secreting white blood cells or the antibodies needed to produce immunoglobulin for my immune system. Basically, there is a breakdown in communication since the message is not getting through to the appropriate cells. I know this breakdown in communication is hard to believe for someone like me who likes to talk! We have reason to believe that this cancer has slowly been invading my system for several years due to my increasing fatigue and the downward spiral of my white blood count.

Currently, I am not in any pain from my cancer. I tire easily due to a compromised immune system and I must be very cautious to stay away from germs and people who might be ill.

My first course of treatment was to begin Tuesday, July 17th, however on the evening of July 11th (after receiving my final diagnosis) I slipped on the steps leading into the laundry room and landed in the emergency room. My heel bone is fractured and there is a bone chip along the ankle which possibly indicates a torn ligament. I am pretty much flat on my back with my foot elevated until I see an orthopedic surgeon on Tuesday to determine if surgery is necessary. Consequently, my treatment cannot begin until my foot is completely healed. My oncology doctor will continue to monitor the condition of my bone marrow through regular blood tests as we wait for my foot to heal.

It has now been 3 days since my fall and I am happy to report that the pain and swelling have decreased considerably, though I am still nursing a very sore bottom with a large, colorful bruise! The Lord knows our every step (and mis-step!), and instead of becoming discouraged over this untimely setback, we trust Him for this apparent Divine delay. We are trying to make the best of this extra time to do further research on my cancer and possible treatments.

It is a blessing that all of this happened after Johanna arrived home (July 5th) since I’m unable to take care of myself and get around right now. I have also been encouraged by the many visits and phone calls from friends. I feel quite isolated at times and hearing from friends and family really brightens my day.

One of the first scriptures that came to us as we began the many weeks of tests, biopsies, scans and x-rays was Romans 8:28, “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” We draw strength from this and have been encouraged to hear this promise repeated by many friends.

Thank you for your continued prayers and support!